Sunday, July 31, 2011

{Vacation: Day One}

Ocean City-8

We arrived in Ocean City, New Jersey last night after a painless three hour car ride.  Both girls did so good in the car.  We decided to transport Angela in a car seat rather than her wheelchair for both her comfort and safety and she was totally thrilled.  As I've said before Angela is Madison biggest fan and Angela was totally head over heals that she got to sit so close to her big sister!

Ocean City-9

Ocean City-7

Today Adam and I got to have some alone time early this morning and went for a run.  Made perfect time, as we got to watch the most beautiful sun rise over the ocean scape -- totally made getting up at five in the morning worth it!  After our run Madison and I took a short bike ride and took a little preview of the ocean.  Our house is just a block away which is just perfect!

Ocean City-6

Ocean City-5

Ocean City-4

We all had lots of fun on the beach today as well!  Both girls are little fishes in the water.  We used Angela's neck float, and although we got lots of stares Angela totally loved body surfing on the waves!  Angela's temp control has been very wacky so she has not been able to tolerate being in the water very long, but at the same time she isn't doing well in the heat either -- so finding that happy medium is a bit of a challenge, but we're making it work.  Of course we have tons of experience with temperature instability from Gavin so it's nothing we can't figure out.

Ocean City-1

Ocean City-3

Tonight the plan is to hit the boardwalk and enjoy time as a family riding rides and enjoying the beautiful beach!

{Going On Vacation}

Pool Fun-4

Life is good, but vacation makes it so much better!  The Owens family is taking a much needed vacation to Ocean City New Jersey.  We have not had a vacation since before Gavin died and we are so very ready.  Ocean City hold so many amazing memories for our little family.  We have vacationed there a few times a year  for as long as I can remember but after Gavin died I have not been able to emotionally go back -- but this year I'm ready.

Pool Fun-7

Pool Fun-6

Pool Fun-5

I'm ready to make new amazing memories and most of all have some time of relaxation and of course some major tri training on the boardwalk and in the ocean.  We will be vacationing with my parents who have always been our biggest supports and we are so lucky to have them as a big part of our lives.

Pool Fun-3

Pool Fun-1

Pool Fun-2

The iMac is coming along on vacation so I can't wait to share our amazing week ahead!  

Saturday, July 30, 2011

{Gavin's Birthday Give: REcap}

Gavin's Birthday Give-6

On Thursday we had the great privilege of delivering the items we collected to celebrate what would have been Gavin's fifth birthday here on Earth.  This year Gavin's birthday brought lots of new emotions -- missing him so much and feeling the pain of time gone by.  But during this time of mourning there was no better way to heal our hearts that to honor our little boy and give back to the place that helped our family live an amazing 3 1/2 years.  

Gavin's Birthday Give-1

Gavin's Birthday Give-5

The feeling of going up to the third floor and walking down the hallway still is pretty surreal.  I love that place and I loved that time of our life.  Despite all the horrible things Gavin and our family endured it still was our life -- and a pretty awesome one filled with so many amazing memories.  

Gavin's Birthday Give-2

Gavin's Birthday Give-7

Giving back is the best way to heal.  The need for infant toys is so great in the hospital and to meet a small portion of that need with the help of everyone who made donations this year was so much fun.  I know when I started the collection this year I found myself very guarded that we would not be able to make a significant donation this year, but was then reminded the truth that every little bit helps.  I remember countless times inpatient and Gavin was given something from Child Life that made our inpatient stay just a little bit better -- it's so exciting to know that so many other families will have this same positive experience.

Gavin's Birthday Give-3

Gavin's Birthday Give-4

Thanks to all who help us keep the memory of our little boy alive.  Gavin's body may no longer be with us anymore but it's in times like this where is presence is ever so real -- his legacy is strong and runs boldly though our family -- holding on to hope and finding joy in the most horrific of situations.

Monday, July 25, 2011

{Big Girl Glasses}

Angela-2

Last week we picked up Angela's very first pair of glasses!  It really was an exciting day for all of us.  After our visit at the low vision clinic in Philadelphia two months ago we were really excited to better understand Angela's vision and left with the hope that our little girl's vision could heal and re-route just like the rest of her little brain.

Angela-6

When we picked up her glasses I wasn't sure what to expect.  The prescription is significant but not overly strong, as her blindness stems from the brain and not her actual eyes.  But to our surprise when she put the glasses on her she smiled from ear to ear and started to look -- everywhere!  The rest of that day she was just looking -- something we are not exactly used to seeing her do.  He eyes often drift or stare into space -- but this time she was really actively looking at us and the house. That night when we took them off she kept rubbing her face as to say, why the heck did you take them off?!  

Angela-5

Finding the prefect pair for Angela was no easy task.  It was suggested to us that we get the miraflex brand, which are rubber and wrap around the head.  They are ok -- but I didn't like them and wanted something more stylish for Angela.  Right now she is not very mobile so we don't need to really worry about her breaking them.  We tried on lots of other infant glasses but we didn't like any of them -- they all looked way to handicap for our vibrant little Angela.  The other issue is that due to Angela's microcephaly she has a very small head.  Her head circumference is only 15 inches, which added a little more challenge.  

Angela-3

We finally found the perfect pair.  They were able to give a nice severe bend to the arms so they kinda wrap around her ear and we also found a great strap.  So far they are working out wonderfully.  She keeps them on and seems to be bothered when we take them off.  I'm sure she is highly motivated by her new world.

Angela-1

Angela is amazing.  She is growing and developing more that anyone ever told her she would.  I just can't wait to see where she is this time next year.

Look out world -- here she comes!

Wednesday, July 20, 2011

{A little Bit of Crazy}

Sisters-2

I love craziness.  It must just be part of my genetic make up -- I do so well when a bit of crazy is added into my life.  It's just how I work.  I'm happier and way more content when a challenge is placed on the table.  My current crazy is coming up on August 28th in Asbury Park, New Jersey -- the SheROX triathlon.  I competed last year but had a friend do the swim for me -- this year it's all me and I'm very excited!

Sisters-4

I'm way behind on my training so I've been needing to get this body into shape fast -- real fast. Last year's triathlon was a huge step in my healing process after Gavin's death.  Everyday when I would train I would have time to just simply reflect and remember by little boy and also work through the intense pain and grief that came along with his death. 

Sisters-5

This year I feel like my focus is a little different.  I of course spend lots of my training time thinking about Gavin and how his life has in many ways helped to define who I am, but I've also been thinking a lot about the women I need to become to best honor not only God but also Adam, Madison and Angela.  I'm excited to not only gain the physical strength but also have a time of personal and spiritual refreshing.

Sisters-1

Along with the Tri training comes the other normal Owens' Family crazy.  Angela has started private swim lessons at the YMCA and so far it's going pretty well.  This was a huge challenge for me -- the idea of letting her go and have independence apart from me is difficult.  But giving Angela the chance to socialize and develop apart from mommie is a huge part of development and something she deserves.  The instructor had no previous experience with a child like Angela, but I taught her a few things and had her utilize Angela's neck float and things are going pretty smooth for both Angela and the instructor -- and mommie!

Sisters-3

Madison is six and creates a crazy like no other.  As Adam mentioned on his Twitter -- being a parent is so hard.  We are trying to create consistency and also a positive summer experience, which is easier said  than done.  Let's just say we are all super excited for first grade!  But you've just got to love her spunk and sassy ways!

Wednesday, July 13, 2011

{Investing In Their Future}

Madison-1

Recently I've been thinking a lot about my children's futures.  I like to dream about what they one day will become.  I often picture Madison as a top surgeon at the local children's hospital -- either that or something crazy like a dancing mime -- these day's it could go either way.  I often wonder and imagine what Angela will look like down the road.  I can see her walking and talking, sharing her life and story and impacting those around her.

Our Church's Kids Ministry will soon begin a new direction, and I think that's what's been making me think so much lately.  Our church, like many others will begin to encourage parents to get involved in their children's spiritual development -- making Sunday morning no longer just a drop your kids off and hope they learn something good kinda thing.  It will help and guide us parents to really begin to have an active role in our kids spiritual lives.

An active role in my children's spiritual development.

Madison-4

I guess I've begun to see in many ways where I lack in this area.  If I were to put as much effort in to Madison's spiritual relationship as I do her health and mental development -- can you even imagine how that would not only impact her but also impact the world around her?  I often say I want Madison to know just how much God loves her -- how beautiful she is -- how she has such an important purpose here on earth -- but do I really ever make an effort to show her those very things?

It's a lot to think about -- I know it's not an easy thing.  I would be the first to think, oh goodness, just one more thing.  But then I start to think of the benefits -- the idea that my girls will walk though their teen years with the boldness, power and peace that only can come from the understanding of who God is and how much He loves them churns up this overwhelming excitement.

Madison-5

I consider it my honor and privilege to invest my time and energy in to the lives of my amazing children!


**Since I work at my church I just want to add in the disclaimer that this is just my personal opinion and not from a work standpoint. Thanks!

Friday, July 8, 2011

{Big Girl Bikes}

Angela Bike-1

Last week both girls got brand new bikes!  Madison has never learned how to ride a bike.  Before Gavin died we bought her a bike that she was never able to actually ride -- it was a beautiful bike but it was way too big.  Adam and I were obviously a bit over zealous when we purchased Madi's first bike, as we bought our 4 year old a twenty inch bike.  Silly us.

Angela Bike-3

Angela Bike-4

Since Angela was getting a new bike though the local Ambucs we knew it was only fair that we also celebrate Madison and also get her a bike that she could actually ride!  She found the perfect hot pink and white Barbie bike and she is doing great on it!

Angela Bike-5

Angela Bike-2

Angela's bike has changed her world.  Before Gavin died he was also given a bike through the Ambucs and gave him the opportunity to do what medical science said he could not -- ride a bike!  We are so grateful that the Ambucs helped give our little boy this experience before his death and we are just as grateful that Angela will now be able to do what other little girls are doing -- riding bike and having fun!

Madi Bike-7

Madi Bike-6Madi Bike-5

Angela's bike give her a motor experience like no other.  Since she is not mobile she never gets to experience reciprocal motion of her legs and arms.  The bike not only give her this motion but also gives her the thrills she seeks and loves -- not to mention puts a huge smile on her face!

Madi Bike-4

Madi Bike-3

The braces on her arms help keep her little spastic arms on the hand petals.  It looks a bit harsh but Angela doesn't mind it at all and actually really enjoys the motion the grips allows her to have.  The bike is equipped with a push bar so that Adam or I can help her ride by walking and pushing from behind, but with lots of effort Angela is able to get the petals around -- that's big stuff!

Madi Bike-2

Thanks so much to the Spring Valley YMCA and the local Ambucs for once again blessing our family with added quality of life!  Thanks for helping to remind the world that despite disability ever person should be able to maintain quality of life and ride a bike!

Tuesday, July 5, 2011

{Amazing Week}

Dutch Wonderland-1

This past week has gone by so quickly.  Our week was jammed packed with so many fun and exciting things -- I've got lots to talk about!  Our week started with kids Camp.  In case you do not know, I am the assistant to the kid's Pastor at Morning Star Fellowship and my family along with about a hundred other kids  and leaders set off to camp on Tuesday for lots of fun adventures and also a time to grow closer to God!  

Dutch Wonderland-3

Dutch Wonderland-2

We all had a great time at camp, though it was a bit difficult for Angela, though she made it through!  Feeding for Angela has still been a huge challenge.  Thanks for all you tips and advice.  Angela is a tough one since she had multiple disabilities going against her.  We decided to back off a bit and let her take a much needed break from full oral feedings.  Angela 1P36 deletion has caused her to have several defects in her mouth.  She does not have a frenulum, which is that little piece of tissue that attaches your tongue to the bottom of your mouth.  This causes her tongue to be completely free, which adds difficulty to the feeding process.  She also has a deformed lower jaw that forms a U-shape when looking at her straight on as well as missing teeth.  This mean that when she closes her mouth there is a nice size hole in the front of her mouth where her teeth should meet.  This allows way to much room for not only her tongue to slip out but also food.  I feel like we really need to address these issues before we continue to push her.

Dutch Wonderland-4

Dutch Wonderland-5

Despite feeding issues she is moving forward and enjoying the summer fun with her big sister Madison!  Both girls got new bikes last week and we took our very first family bike ride, which was so special on so many levels!  Angela's bike was custom made just for her through the local Ambucs -- I'll be doing a separate post on her new bike with lots of photos!

Dutch Wonderland-7

Dutch Wonderland-6

To end our wonderful week we took a trip to Dutch Wonderland with my parents.  I was feeling a bit anxious about going since I have so many memories of taking Gavin and Madison there, but once we got there it was so much fun and it was great to make new memories.  Before we left I made Angela a special support harness so that she would be able to ride the ride, since she is a thrill seeker and I knew she would totally love it!

Dutch Wonderland-9

Dutch Wonderland-10

The harness was made from thick fabric along with Velcro.  The harness wrapped around her torso and there was also a piece of fabric that ran between her leg.  Attached to the torso where two long pieces of fabric that went in front of her shoulders and could be looped around the back of the ride or to Madison to give her extra support and to keep her from falling side to side or forward.  It worked great and she had a blast.  She tired out pretty quickly in the sun so she only made it onto a few rides -- but totally loved them all! The park was very accessible and we were able to get a pass so we could enter through the exit and not have to worry about getting her chair through the lines.  The staff was super nice and assured us that they would stop the rides if Angela needed to get off -- which never happened! My only complaint was that the monorail was not accessible and we were unable to go on it.  There were two flights of steps leading up to it and we did want to leave Angela's wheelchair unattended at the bottom.  But this was such a tiny negative amongst so many positives!

Dutch Wonderland-8

Dutch Wonderland-11

We are all so ready for a nice quiet week.